Agnieszka Ignatowicz

Wake up, wake up! It’s me! It’s my life! patient narratives on person-centeredness in the integrated care context: a qualitative study

BackgroundPerson-centered care emphasizes a holistic, humanistic approach that puts patients first, at the center of medical care. Person-centeredness is also considered a core element of integrated care. Yet typologies of integrated care mainly describe how patients fit within integrated services, rather than how services fit into the patient’s world. Patient-centeredness has been commonly defined through physician’s behaviors aimed at delivering patient-centered care. Yet, it is unclear how ‘person-centeredness’ is realized in integrated care through the patient voice. We aimed to explore patient narratives of person-centeredness in the integrated care context.MethodsWe conducted a phenomenological, qualitative study, including semi-structured interviews with 22 patients registered in the Northwest London Integrated Care Pilot. We incorporated Grounded Theory approach principles, including substantive open and selective coding, development of concepts and categories, and constant comparison.ResultsWe identified six themes representing core ‘ingredients’ of person-centeredness in the integrated care context: “Holism”, “Naming”, “Heed”, “Compassion”, “Continuity of care”, and “Agency and Empowerment“, all depicting patient expectations and assumptions on doctor and patient roles in integrated care. We bring examples showing that when these needs are met, patient experience of care is at its best. Yet many patients felt ‘unseen’ by their providers and the healthcare system. We describe how these six themes can portray a continuum between having own physical and emotional ‘Space’ to be ‘seen’ and heard vs. feeling ‘translucent’, ‘unseen’, and unheard. These two conflicting experiences raise questions about current typologies of the patient-physician relationship as a ‘dyad’, the meanings patients attributed to ‘care’, and the theoretical correspondence between ‘person-centeredness’ and ‘integrated care’.ConclusionsPerson-centeredness is a crucial issue for patients in integrated care, yet it was variably achieved in the current pilot. Patients in the context of integrated care, as in other contexts, strive to have their own unique physical and emotional ‘space’ to be ‘seen’ and heard. Integrated care models can benefit from incorporating person-centeredness as a core element.

Achieving Provider Engagement Providers’ Perceptions of Implementing and Delivering Integrated Care

The literature on integrated care is limited with respect to practical learning and experience. Although some attention has been paid to organizational processes and structures, not enough is paid to people, relationships, and the importance of these in bringing about integration. Little is known, for example, about provider engagement in the organizational change process, how to obtain and maintain it, and how it is demonstrated in the delivery of integrated care. Based on qualitative data from the evaluation of a large-scale integrated care initiative in London, United Kingdom, we explored the role of provider engagement in effective integration of services. Using thematic analysis, we identified an evolving engagement narrative with three distinct phases: enthusiasm, antipathy, and ambivalence, and argue that health care managers need to be aware of the impact of professional engagement to succeed in advancing the integrated care agenda.

Timely digital patient-clinician communication in specialist clinical services for young people: A mixed-methods study (the LYNC study)

Background Young people (aged 16-24 years) with long-term health conditions can disengage from health services, resulting in poor health outcomes, but clinicians in the UK National Health Service (NHS) are using digital communication to try to improve engagement. Evidence of effectiveness of this digital communication is equivocal. There are gaps in evidence as to how it might work, its cost, and ethical and safety issues. Objective Our objective was to understand how the use of digital communication between young people with long-term conditions and their NHS specialist clinicians changes engagement of the young people with their health care; and to identify costs and necessary safeguards. Methods We conducted mixed-methods case studies of 20 NHS specialist clinical teams from across England and Wales and their practice providing care for 13 different long-term physical or mental health conditions. We observed 79 clinical team members and interviewed 165 young people aged 16-24 years with a long-term health condition recruited via case study clinical teams, 173 clinical team members, and 16 information governance specialists from study NHS Trusts. We conducted a thematic analysis of how digital communication works, and analyzed ethics, safety and governance, and annual direct costs. Results Young people and their clinical teams variously used mobile phone calls, text messages, email, and voice over Internet protocol. Length of clinician use of digital communication varied from 1 to 13 years in 17 case studies, and was being considered in 3. Digital communication enables timely access for young people to the right clinician at the time when it can make a difference to how they manage their health condition. This is valued as an addition to traditional clinic appointments and can engage those otherwise disengaged, particularly at times of change for young people. It can enhance patient autonomy, empowerment and activation. It challenges the nature and boundaries of therapeutic relationships but can improve trust. The clinical teams studied had not themselves formally evaluated the impact of their intervention. Staff time is the main cost driver, but offsetting savings are likely elsewhere in the health service. Risks include increased dependence on clinicians, inadvertent disclosure of confidential information, and communication failures, which are mostly mitigated by young people and clinicians using common-sense approaches. Conclusions As NHS policy prompts more widespread use of digital communication to improve the health care experience, our findings suggest that benefit is most likely, and harms are mitigated, when digital communication is used with patients who already have a relationship of trust with the clinical team, and where there is identifiable need for patients to have flexible access, such as when transitioning between services, treatments, or lived context. Clinical teams need a proactive approach to ethics, governance, and patient safety.

Measuring ‘virtue’ in medicine

Virtue-approaches to medical ethics are becoming ever more influential. Virtue theorists advocate redefining right or good action in medicine in terms of the character of the doctor performing the action (rather than adherence to rules or principles). In medical education, too, calls are growing to reconceive medical education as a form of character formation (rather than instruction in rules or principles). Empirical studies of doctors’ ethics from a virtue-perspective, however, are few and far between. In this respect, theoretical and empirical study of medical ethics are out of alignment. In this paper, we survey the empirical study of medical ethics and find that most studies of doctors’ ethics are rules- or principles-based and not virtue-based. We outline the challenges that exist for studying medical ethics empirically from a virtue-based perspective and canvas the runners and riders in the effort to find virtue-based assessments of medical ethics.

Staff perceptions on patient motives for attending GP-led urgent care centres in London: a qualitative study

Objectives General practitioner (GP)-led urgent care centres were established to meet the growing demand for urgent care. Staff members working in such centres are central in influencing patients’ choices about which services they use, but little is known about staff perceptions of patients’ motives for attending urgent care. We hence aimed to explore their perceptions of patients’ motives for attending such centres. Design A phenomenological, qualitative study, including semistructured interviews. The interviews were analysed using thematic content analysis. Setting 2 GP-led urgent care centres in 2 academic hospitals in London. Participants 15 staff members working at the centres including 8 GPs, 5 emergency nurse practitioners and 2 receptionists. Results We identified 4 main themes: ‘Confusion about choices’, ‘As if increase of appetite had grown; By what it fed on’, ‘Overt reasons, covert motives’ and ‘A question of legitimacy’. The participants thought that the centres introduce convenient and fast access for patients. So convenient, that an increasing number of patients use them as a regular alternative to their community GP. The participants perceived that patients attend the centres because they are anxious about their symptoms and view them as serious, cannot get an appointment with their GP quickly and conveniently, are dissatisfied with the GP, or lack self-care skills. Staff members perceived some motives as legitimate (an acute health need and difficulties in getting an appointment), and others as less legitimate (convenience, minor illness, and seeking quicker access to hospital facilities). Conclusions The participants perceived that patients attend urgent care centres because of the convenience of access relative to primary care, as well as sense of acuity and anxiety, lack self-care skills and other reasons. They perceived some motives as more legitimate than others. Attention to unmet needs in primary care can help in promoting balanced access to urgent care.

Virtue in Medical Practice: An Exploratory Study

Virtue ethics has long provided fruitful resources for the study of issues in medical ethics. In particular, study of the moral virtues of the good doctor—like kindness, fairness and good judgement—have provided insights into the nature of medical professionalism and the ethical demands on the medical practitioner as a moral person. Today, a substantial literature exists exploring the virtues in medical practice and many commentators advocate an emphasis on the inculcation of the virtues of good medical practice in medical education and throughout the medical career. However, until very recently, no empirical studies have attempted to investigate which virtues, in particular, medical doctors and medical students tend to have or not to have, nor how these virtues influence how they think about or practise medicine. The question of what virtuous medical practice is, is vast and, as we have written elsewhere, the question of how to study doctors’ moral character is fraught with difficulty. In this paper, we report the results of a first-of-a-kind study that attempted to explore these issues at three medical schools (and associated practice regions) in the United Kingdom. We identify which character traits are important in the good doctor in the opinion of medical students and doctors and identify which virtues they say of themselves they possess and do not possess. Moreover, we identify how thinking about the virtues contributes to doctors’ and medical students’ thinking about common moral dilemmas in medicine. In ending, we remark on the implications for medical education.

Colorectal cancer with Synchronous liver-limited Metastases: the protocol of an Inception Cohort study (CoSMIC)

Introduction Colorectal cancer is the fourth most common cancer in the UK and an important cause of cancer-related death. In 20% of patients, there is metastasis to the liver or beyond at the time of diagnosis. The management of synchronous disease is complex. Conventional surgery removes the colorectal primary first, followed by chemotherapy, with resection of liver metastases as a final step. Advances in the availability and safety of liver surgery, anaesthesia and critical care have made two alternative options feasible. The first is synchronous resection of the primary and liver metastases. The second is resection of the metastatic disease as the first step, termed the reverse or liver-first approach. Currently, evidence is inadequate to inform the selection of care pathway for patients with colorectal cancer and synchronous liver-limited metastases. Specifically, optimal pathways are not defined and there is a dearth of prospectively recorded cohort-defining factors influencing treatment selection or outcome. Methods and analysis Colorectal cancer with Synchronous liver-limited Metastases: an Inception Cohort (CoSMIC) is an inception cohort study of patients with a new diagnosis of colorectal cancer with synchronous liver-limited metastases. The sequence of treatment received, and factors influencing treatment decisions, will be evaluated against European Society of Medical Oncology guidelines. Clinical data will be collected, and quality of life, morbidity, mortality and long-term outcome compared for different treatment sequences adjusted for prognostic factors. Disease-free survival or progression will be measured at 1, 2 and 5 years. A nested qualitative study will ascertain patient experiences and clinician perspectives on delivery of care. Ethics and dissemination The full study protocol was independently peer reviewed by Professor Kees de Jong (University of Maastricht, Holland). CoSMIC has ethical approval from the National Health Service Research Ethics Committee (14/NW/1397). Results will be disseminated to healthcare professionals and patient groups, and may be used to design a definitive trial addressing areas of equipoise in treatment pathways, as well as optimising current pathways to improve outcomes and experiences. Trial registration number NCT02456285, pre-results.

Ethical implications of digital communication for the patient-clinician relationship : analysis of interviews with clinicians and young adults with long term conditions (the LYNC study)

BackgroundDigital communication between a patient and their clinician offers the potential for improved patient care, particularly for young people with long term conditions who are at risk of service disengagement. However, its use raises a number of ethical questions which have not been explored in empirical studies. The objective of this study was to examine, from the patient and clinician perspective, the ethical implications of the use of digital clinical communication in the context of young people living with long-term conditions.MethodsA total of 129 semi-structured interviews, 59 with young people and 70 with healthcare professionals, from 20 United Kingdom (UK)-based specialist clinics were conducted as part of the LYNC study. Transcripts from five sites (cancer, liver, renal, cystic fibrosis and mental health) were read by a core team to identify explicit and implicit ethical issues and develop descriptive ethical codes. Our subsequent thematic analysis was developed iteratively with reference to professional and ethical norms.ResultsClinician participants saw digital clinical communication as potentially increasing patient empowerment and autonomy; improving trust between patient and healthcare professional; and reducing harm because of rapid access to clinical advice. However, they also described ethical challenges, including: difficulty with defining and maintaining boundaries of confidentiality; uncertainty regarding the level of consent required; and blurring of the limits of a clinician’s duty of care when unlimited access is possible. Paradoxically, the use of digital clinical communication can create dependence rather than promote autonomy in some patients. Patient participants varied in their understanding of, and concern about, confidentiality in the context of digital communication. An overarching theme emerging from the data was a shifting of the boundaries of the patient-clinician relationship and the professional duty of care in the context of use of clinical digital communication.ConclusionsThe ethical implications of clinical digital communication are complex and go beyond concerns about confidentiality and consent. Any development of this form of communication should consider its impact on the patient-clinician-relationship, and include appropriate safeguards to ensure that professional ethical obligations are adhered to.